Tag Archive for: surgery

Weight loss for surgery

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At my surgical appointment this week it was suggested that I should lose some weight to increase my chances of my pouch surgery going well.

Since the birth of my kids I gained a lot of weight and then have yo yo-ed since then. I’ll lose weight during flares then gain it back. Last year I had months of steroids which caused me to gain a lot and surgery where I lost weight. Then during my recovery where I couldn’t do much physical exercise and being unable to eat much fruit or veg but encouraged to eat white bread, pasta and rice I then gained more!

I have been looking at my weight since January and I have lost 10 lbs, but I know I’m still probably two and a half stone overweight.  My BMI is currently 28 which puts me near the top end of overweight.  Ill be honest, it doesn’t bother me massively, I like the way I look, I know Im not stick thin but I think I look fucking good! (and Im SO modest!) But I do want to be fitter, healthier and stronger.

stoma ileostomy photo shoot woman beauty

The doc was really nice about it and was simply telling me how to increase my chances of a better outcome.  I know a lot of crohnies really struggle with being underweight but for me it’s the other way.

So I need to get on it, it feels very much like when I stopped smoking.  I liked smoking, I know that sounds bad and isn’t the right thing to say these days, but I did like it.  I knew it was bad for me and I knew that Timm and the kids hated me smoking but I never really wanted to stop.  Then my consultant told me that I was five times more likely to have a flare up of ulcerative colitis if I was a smoker.  I quit that day.

Id been a smoker for 15 year and I just stopped. I felt that if I continued smoking after Id been told this and then had a flare up, that it would be my own fault.  Every time I put a cigarette to my lips I thought about how sick I was during a flare up, I thought about being on medication and having to stay in hospital and funnily enough, it made me not want to have that smoke!

I feel the same now, I know that by my BMI I am overweight, I know that my health could be better and I could be fitter if I lost some weight.  I have dieted over the years and never really got on top of it.  Ill lose a stone or two and then slowly gain it back.  Also whilst I was ill, my weight just didn’t seem like a priority. But now I feel that if I don’t lose weight and something goes wrong with the surgery or my recovery, that it will be my own fault.  I feel that I have to do this now to give myself the best chances of an easy recovery.

I know it isn’t as simple as that and that complications can arise whatever your weight, but now I have heard it, I feel its something I must do.  It feels easier to say no to that slice of cake or takeaway because the fear of surgery going wrong is far higher than my desire to eat fatty foods or chocolate and sweets. I have six months to lose the weight, so Im just getting back on the healthy eating, going to the gym and getting more exercise.  Wish me luck! getting fit after surgery

I think a lot of this has to do with control too, I have little control over what happens with my body at the moment, the surgery isn’t what I planned for my life but I need to have it and so it is out of my hands.  I can’t control the disease or treatment, but I can control how I treat my body, what fuel it gets and how I exercise and so that is what Ill do.

I need to know I am going into the surgery match fit and so if that means cutting out the cake and hitting the gym hard, that is what Im going to do.

Sam xx

Parastomal Hernia

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Over the past couple of months I developed some swelling behind my stoma, I thought it was due to the heat, the humidity and the amount of activity I was doing whilst we were  in Australia.  But since we got back, the swelling didn’t really go down.  It is worse in the evening and goes up and down, its causing me some discomfort but not really painful.

I spoke to my stoma nurse who thought it was a hernia, but as I was due to see my surgeon she suggested that I refrained from any lifting and saw what Mr Brown said.  He confirmed that he thought it was a hernia and that he could repair it surgically but as I am probably planning the pouch surgery it would be worth just trying to deal with it and wait till the takedown surgery when my stoma will be removed anyway.

A hernia is when there is a weakness in muscle tissue that causes the intestine to bulge through.  Because a stoma goes through the abdomen it becomes a compromise in the muscles and hernias can be common in people with a stoma.  A hernia behind the stoma is called a parastomal hernia.  The term parastomal hernia is used to describe a bulge or swelling around or under the stoma that leads to problems with stoma function and appliance security. This usually occurs gradually and the hernia may increase in size over time.

Its probably a good idea for you not to google this term though… Some of the photographs are fairly graphic!

There are many factors that contribute to the development of a parastomal hernia including:

  • Coughing and sneezing.
  • Straining: this can happen when lifting heavy objects or duringstrenuous activities such as gardening.
  • Infection at the site of the stoma or abdominal wound.
  • Muscles becoming weaker with age.
  • Being overweight.
  • Poor siting of the stoma.
  • Emergency surgery.

The treatment differs depending on the extent of the hernia, mine appears to be relatively minor and so Im happy to wear a hernia support made for people with stomas.

parastomal hernia support

Exercise or Pilates, aimed at strengthening the core muscles, may help too.

For others the treatment will be surgery;

A tissue repair at the site of the hernia is a relatively simple procedure, but there is a high risk of the hernia recurring.

Repair and re-siting of the stoma to another location on the abdomen is a bigger operation involving a larger incision, but the chance of the hernia recurring is lower.

Repair and reinforcement of the hernia site with mesh carries a very small risk of infection but the chance of the hernia recurring is lower.

This information comes from the Colostomy Association.

As always with this blog, I am not a medical professional and all my thoughts here are entirely my own and in no way replace medical advice.  If you are worried you might have a parastomal hernia, then get in touch with your stoma nurse, doctor or clinic.

Love Sam xx

J Pouch surgery

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So this morning I had an appointment with my lovely surgeon Mr Brown, it was an 8.30am appointment and so with it being half term we got the kids ready and set off at 7.30.

We got to the hospital, parked and was in the clinic for 8.15. The receptionist said she couldn’t check me in as she was medical and I had to wait for the surgical receptionist to get there. At 8.35 she arrived and then told me we were at the wrong hospital!!!

I showed her my letter that said it was at this hospital and she said ‘oh yeah, we sent the wrong letter!’

We then had to drive across Sheffield in rush hour traffic to get to the other hospital right on the other side of the city and just wait to be fitted in.

I could have cried! You work yourself up for these appointments, worrying about what the outcome will be and to then face more travel and time is a total pain.

so bad ass sam cleasby ibd awareness

Anyway we eventually saw the surgeon. Timm came with me for moral support and to remember the questions I always forget I want to ask and the answers given that drift out of my head before I reach the lifts.

Mr Brown is so nice, he’s my favourite doctor and always makes me feel better. We discussed the hernia that I have developed (Ill be doing a separate blog post about that) and then we talked through the pros and cons of pouch surgery.

I have to have a test done to check the muscle strength in my arse… Lovely. Basically they put a tube up your bum and it checks the pressure and sensitivity of your butt muscles. If they aren’t strong enough, it’s a good indicator that post pouch surgery you could be incontinent.

I’ve never had issues with that before so were all hopeful it won’t be an issue. Once that test is done, he is happy to go ahead with the surgery. Due to work and family commitments we have asked for the surgery to be done at the end of September or beginning of October.

Our photography business The Picture Foundry is sooooo busy at the minute, I also work with arts collective Responsible Fishing and this summer is crazy busy for us with creative workshops for children, arts installations and festivals.

I also am beginning to get busy with presenting talks on self esteem and body image and working with teenagers on a whole host of projects. I’m writing a lot more and got a few guest posts on blogs, magazines and even a bit of copywriting and blog writing for other companies on the go.

Oh yeah, and I’m moving house and renewing my wedding vows!!! So I have just a bit on my mind right now.

But come October things will calm down a bit and I can afford to have the time off work and timm will be less busy and able to look after the kids and me.

so bad ass sam cleasby ibd awareness

So the surgery…

colectomy and ileostomy diagram

The first picture is a normal digestive system, the second is after a colectomy and showing an ileostomy.  Im currently at the second picture stage.

J-pouch diagram

This is what the digestive system looks like after j-pouch surgery. You can see that the entire colon has been removed and that only the small intestine is left.  The end of the small intestine currently forms my ileostomy, during pouch surgery the surgeon constructs a pouch out of the small intestine by folding it up on itself and making it into a reservoir.  This is then attached to the anal canal.

This is called pouch surgery or ileo-pouch anal anastomosis or IPAA… Also known as J pouch, Internal Pouch or ileo-anal pouch.

After this surgery I will no longer have my stoma or ileostomy bag, my waste will go through my system and then be stored in the pouch, because I still have control of the muscles in my bum I’ll be able to hold waste and pass it normally into the toilet.

There are a few issues surrounding pouch surgery, one is that as the pouch is no where near as big as my large intestine was, Ill need to go to the toilet quite a few times a day.  Most people after everything is settled go 4-6 times a day or whenever they pee.  This may seem like a lot to someone without IBD but when I was having a flare of of Ulcerative Colitis I could be going 20-25 times a day with urgent, bloody diarrhoea and painful stomach cramps.  Currently with my ileostomy I go to the toilet and empty my bag around 5 times a day plus once or twice during the night, so this part doesnt bother me too much.

Other problems can be butt burn… basically, the large intestine neutralises your poo, when you don’t have that, the waste that leaves your system is quite acidic.  Currently with an ileostomy if I get waste on my skin through leaking, it can burn my skin and leave it really sore.  So after pouch surgery that same waste will be coming out of my butt.  Hence the butt burn.  Using a barrier cream and baby wipes is told to really help with this and apparently the skin soon toughens up and learns to deal with it!

Pouchitis is inflammation of the pouch, it is treated with a course of antibiotics.

Mr Brown would like me to have the one step surgery.  This means that the pouch will be formed and connected in one step, Ill wake up without an ileostomy.  It requires at least 10 days in hospital, during this time I will be on a liquid only diet and have a tube placed into the pouch that will irrigate it three times a day.

The alternative is the two step surgery in which the pouch is formed and attached, but another ileostomy is created further up the digestive system to divert waste from the pouch till it is full healed.  Then after a few weeks, the second surgery is performed to close up the ileostomy and the pouch begins to work.

There are risks to both, as with any surgery.  The one step is quite a tough recovery but I trust my doctor and having researched a lot I am happy to go with the one step. (I think!!!)

There are risks associated with fertility, but as I already have three kids and Im definitely not planning any more this isn’t a problem for me.  Other potential problems are internal leaking which can lead to all manner of bad juju, incontinence, abcesses, fistulas and all manner of other scary stuff.

I really want to go into surgery as informed as possible, its so important to me to feel like I know exactly what Im getting into BUT I have just spent the last hour terrifying myself by reading forums of people with pouches.  I need to remember that people are more likely to write about bad experiences than good ones.  There are always complications and problems possible with any surgery, its not good to get caught up on every single what if.  Ive done my research, spoke to my surgeons and specialised nurse and I *think* I have made up my mind.

Its not an easy decision.  My ileostomy is now healed and I have very few issues with it, I eat pretty much what I want with only a few exceptions and my life is a million times better than before I had surgery.  So it does feel like a risk to have another surgery that could possibly make things difficult again for a while.

They say it takes around 18 months for your body to become used to the pouch.  Thats a bloody long recovery time, but the chances are good that my life will be better and I won’t have the ileostomy bag any more.

As for success rates of pouch surgery, the generally accepted figures are these…

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So I have an 80% chance that things will be fine.  I need to remember this when Im stressing out and crying because Im reading yet another forum with people screaming their woes.

Im feeling quite stressed about the whole decision process, but Im lucky to have a fab husband to support me and a great doctor who in knowing my worries has given me his email address so I can talk any concerns through direct with him.

Thanks for reading

Sam xxx

Pouch surgery after ileostomy – making the decision

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I had my first surgery on 3rd September and that was a subtotal colectomy with ileostomy.

My options from that point are…

To keep the ileostomy permanently, this would mean one more surgery where they remove all my rectum and anus and sew everything up! (Barbie butt…)

To have a pouch made out of my small intestine that is attached to my butt so that I can then empty my bowels through my bum and not have an ileostomy any more. This is two more surgeries.

To wait. There is no immediate need to make the decision. I can wait till I’m entirely sure. They like you to make the decision within 3-5 years as the risk of cancer in the rectal stump (least attractive words ever…) increases after this point.

There are pros and cons to all options. I’m dealing with my bag well now, but I just don’t know whether I’m happy to have it forever. The surgery is so FINAL…

But the pouch surgery can be a difficult recovery. They say to give yourself a year to recover. The muscles in my arse haven’t worked for do long that it takes a while to re learn how to use them. The pouch is also quite small and so learning how to use it can take time.

There’s also the thought of two more surgeries which is pretty terrifying.

I’m scared of going back to hospital, I’m scared of being helpless again and I’m scared that the recovery will break me.

BUT I think I have made the decision.

I’m not ready to give up on my arse, as much as my bag is now easier to deal with I just don’t think I want to keep it forever without even trying the pouch surgery. So I’m going to see my consultant in a couple of weeks to let him know that I’d like to move forward.

My life is currently crazy busy, between our family photography business, family stuff, planning our wedding renewal, a summer working with our arts group Responsible Fishing around the UK and a million and one other things, I’m hoping that the surgery could take place after September when things should calm down a little!!

The decision is a big one and I’ve spent a long time deciding what I want to do as well as talking to my husband and a lot of people on forums around the net. Who knows if it’s the right one? If the pouch surgery didn’t work or just wasn’t the right option for me, I now know that I could deal with keeping my bag forever, but I think I’ll regret not trying to regain a more normal life and having the pouch.

I’ll post more after my hospital appointment!

Sam xxx

Post Surgery check up – moving forward

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Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous.  Timm and I went to the Hallamshire to meet with Mr Brown, my consultant.  He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?”  I replied that I felt great.  He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!

He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister.  We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery.  Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.

gold boots

I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?

I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag.  I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa.  I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!

I had my first communal changing room experience with the bag.  As most women know, the communal changing room is a fearful place.  There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else.  Well I was nervous and initially went into the loo to change.  I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area.  After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp.  And I did it!  I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else.  I helped that I was with my good friend who always boosts my confidence.

Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward.  My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!

barbie butt

My second option is to have pouch surgery.  Pouch surgery is also known as ileo anal pouch or j pouch surgery.  Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum.  Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.

pouch surgery

There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet.  He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then.  I have arranged another appointment in six months time and hope to have made the decision by then.

I really don’t know what to do for the best.  Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me.  I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now.  Ill look into everything in the next few months and see what I think.

Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia!  We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.

Love Sam xx

#gettingstrong

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I blogged recently about joining the gym and also swimming with an ileostomy bag and wanted to do a catch up post about the first week in my quest of #gettingstrong – the hash tag is what Im using for both instagram and twitter.

I just want to explain a little more about my reasons behind this lifestyle change.  I laugh and joke about shedding the fat and getting skinny, but I have to admit my main reason is fear.

Im scared, man!  After my surgery and during the first few weeks of my recovery I was shocked and so frightened by just how weak my body was.  I *know* it’s normal to be wiped out ofter surgery and that was explained to me but the reality of it was extremely difficult.  The total lack of control was the hardest, the inability to even walk to the toilet, the need for help in the shower and the extreme tiredness freaked me out.  Im an independent woman and Ive always done everything for myself.  I moved out of home at a young age, and then once married I spent 9 months of the year raising the kids alone as Timm’s job took him away from home so much.

post surgery ibd ulcerative colitis colectomy ileostomy

Post op

So to suddenly have to entirely rely on other people was HARD.  Timm stepped in and did so much, along with help from family and friends (for which Im so grateful) I didn’t need to raise a finger.  The first weekend after I came out of hospital Timm had to work away for the weekend and so my mum and best friend Caroline came and looked after me, they cooked, cleaned, helped me shower, changed bedding and just cared for me.

The weeks of laying in bed were really difficult, as much as I knew it was necessary to allow my body to heal, meant that my muscles became even weaker.  After the hardship of the ulcerative colitis, then the huge amounts of medication pushed into me and then the surgery itself, I have never felt so completely drained, weak and helpless.  The steroids I had been taking for months had made me gain weight and made me feel like crap.

I know that whatever decision I take in the next year, whether I keep my ileostomy bag or have the take down pouch surgery, I will have to have at least one more surgery.  The thought of this terrifies me, not so much the surgery itself (though that’s pretty scary too) but the recovery… The idea of being reduced back to a weak, out of control being is kind of heart breaking.

And so I have two options.  I can spend the next year worrying, panicking and being upset at the thought or I can take control of the situation and do everything I can to ensure that going into that operating theatre I am as strong, healthy and fit as possible.  I know that this won’t stop me needing to recover and that Ill still feel like shit after the op whatever I do, but if I can go in feeling strong, I have a better chance of an easier recovery.

This week I joined the gym, I have been swimming, been to the gym twice, once with a personal trainer, done an aqua fit class, a deep water fitness class and a Pilates session!  My ileostomy bag held up for all of the activities and I have been careful and made sure Im not straining myself too much.  All of this just 8 weeks after surgery!!

getting fit after surgery

In my gym gear – can you see my bag?

This surgery saved my life, it has improved my quality of life vastly and meant I could come off the vast amount of medication I was taking before.  In stopping the meds I already feel a million times better.  I realised that I have been taking my body for granted for so long.  Now Im missing my colon I need to use this time to start looking after myself.

And so that is what Im doing.  I refuse to choose fear.  I choose #gettingstrong

Love Sam xx

Four weeks post op

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Wow! What a difference a month makes! Four weeks ago today I had my surgery, I had my large bowel removed in a subtotal colectomy and an end ileostomy formed.

Four weeks ago about now I was being taken to the HDU, I was covered in wires, drips and tubes. It was a scary day and a month on I think I’m still a bit in shock that it actually happened.

In the past four weeks there’s been ups and downs, good days and bad. On the good days I’m thankful that I no longer have ulcerative colitis, that Im not on any medication and that my life can begin again. On bad days I feel sorry for myself. I feel angry that this had to happen to me and sad that I have this bloody bag on me all the time.

The weekend was fantastic. Definitely good days. On Saturday my best friends Caroline and Jamie were round and we had a work day planning all the exciting things we are doing in the next year with our arts group Responsible Fishing – it felt great to be getting back to some work and then we ended the evening with food, wine, a fire and a film.

Sunday we went to my mums for dinner, my friends, Aunty and cousins joined us. Mum made her amazing curries and we had a lovely day eating, drinking and laughing. It’s my first curry since the op, so I was terrified it was going to react badly with my stoma. My mum is from Aizawl, near India and so family curry days are a big part of our lives. I can report that my stoma likes beef curry, chicken biryani and dahl!!!

My friend Corinne (aka Motherscuffer) had her baby this weekend which was huge cause for celebration! I haven’t met her newest son Arthur yet but I can’t wait to see him for a squeeze!!!

Yesterday I had trouble with my bag leaking. And then when I was trying to change it, it kept ‘going off’. There’s no muscle in my stoma and so I have no control over when output (poo to you and me) comes out. Yesterday it was bad timing on when I changed it and EVERY time I cleaned up, put on the powder and barrier and then tried to put a bag on it ‘went off’. It was really frustrating and took me 45 minutes ending in me crying and feeling very down.

I didn’t sleep well last night. I’m off the steroids and no longer taking the sleeping tablets. But it was the fear off leaking in bed that kept me up. Timm told me it was fine, to sleep and if anything happened he’d deal with it all. He is fab and not at all squeamish with the whole thing which really helps but every time I was about to drop off, I’d imagine I was leaking and wake up. Very frustrating as I was telling myself to sleep, that it probably wouldn’t lean but if it did, it would be all ok,but my mind just wouldn’t accept that!

I’ve seen my stoma nurse today who is helping me try different bags to get my confidence back up and to get a bag that works for me. The problem is that my stoma is very close to both my belly button and my scar, I also have changes to my skin where the scars are pulling it inwards so I have dips in my stomach.

These things mean that it’s quite awkward to fit the base plate to my skin and that I have to fill the dips with paste. This means that changing my bag is stressful and time consuming. It’s really frustrating and makes me worry about how Ill get on with it in the coming months. I’m worried about working, I run a photography company with Timm and I worry that all the pressure is on him. I just hope things will get easier.

I’m recovering really well though. My wound which is around 6 inches long that 4 weeks ago was opened up and allowed surgeons to have a good rummage around is closed and just looks like a red line with dots around it (the staples marks!) My stoma is healing really well. I’m off ALL meds which just feels amazing!! And I’m starting to get my strength and stamina back.

I still have to take it really easy, one task can mean an hours nap but its great to be back on my feet and to gain back a little independence. I still rely on Timm a lot but its nice to be able to make tea for the kids now and again or to do little things around the house and garden.

We have a few large apple trees in the garden and tonight I was out with Timm collecting all the wind falls. I did have to sit on the ground but it was fab to be getting out and doing. We have soooooo many apples so were planning a lot if apple based dishes and more excitingly cider!!!

My body has healed so well over the past four weeks and I know it’s going to get better each day now. Though I sometimes feel emotional, angry and upset I keep trying to stay positive, be mindful of all the good things in my life and look to the future.

Because four weeks ago I was cured of ulcerative colitis, the disease that rules my life for ten years. And so for that I am truly grateful.

Love Sam xx

Patience and Recovery

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Its been 17 days since my surgery and Im healing well. My wound is closed and I have no pain in it, the scar is about 6 inches long and as it was stapled together I have the line and dots of a staple scar. A friend told me that after she had surgery, her doctor told her to use any sort of natural
oil, grape seed, olive etc – that you didn’t need posh bio oils or other ‘scar healing’ lotions or potions, and to massage her scar for 10 minutes a day. The motion of massage encourages healing in the scar, it improves blood circulation and increases the collagen. She showed me her scars and they were thin white lines, barely visible. So I have taken this advice and I hope it will help mine too.

20130920-145854.jpg

My stoma nurse visited today, she is fantastic and answered a few questions I had. I have some soreness to my skin where the ileostomy bag sticks to my skin right at the bottom, she advised that I am carefully peeling off the top of the bag when I remove it, and then pulling it off quickly at the bottom. And yep! She was totally right, that’s what i have been doing! The enemy of anyone with a stoma is sore skin. Sore skin can become open wounds very quickly, open wounds are wet and you cannot stick a bag onto wet skin. So good skin care is vital.

Im less weepy than yesterday, I think part of my problem is that I am still tapering off the steroids and they are notorious for affecting moods and emotions. Today feels more positive but I am struggling with one thing. Patience.

Im not the most patient of people at the best of times. I can’t leave christmas presents under the tree without a good squeeze. If I hear that someone is planning something as a surprise Ill pick at them trying to get clues!

Physically I am healing well. I am still taking painkillers regularly but everything is going to plan. Im well on the road to recovery. Im doing slightly more each day, this week I had the trip shopping and last night we went out to dinner for my son’s birthday. But I feel it when I do more, I tire very quickly and feel the pain more. When I lay down at night, I ache. Im walking well now and working on my posture as I have been stooped for weeks in protection of my stomach.

But now I can do more, it is very difficult to have patience with my body. I know I have to take it really slowly, that doing too much will hinder my overall recovery and could cause problems but Im struggling!! Timm won’t let me lift a finger, he’s still doing all the cooking, cleaning, school runs plus running our business so I feel bad in not being able to help him. He tells me off and just wants me to have the proper rest and recovery. Its nice to be looked after but quite difficult to accept. Im so used to doing everything for myself so it takes a big shift in mindset to look after myself first and allow others to help.

So I try to be patient. I know I need to put trust in my body and give it time to heal and get used to the huge changes that have been made to it. Im grateful and happy that it is doing this so well! I have had no complications and everything is healing well. My stoma is functioning really well and the pain is lessening. I find that the time between painkillers is lengthening slightly. Im not watching the clock to see when I can have more which is an improvement! The body is a bloody clever thing and mine is doing a great job.

I want to get back to work as soon as I can. I run our family photography business with Timm (go check us out – The Picture Foundry) and also work with arts group Responsible Fishing and we have really exciting projects coming up, so Im looking forward to getting back in the saddle. Weirdly, I also want to do some house work – I can’t even believe Im saying that!!! Timm is doing a great job, but you know what its like, no one can do things just as you do (nor do I expect them to!!)

I really want to walk our dog Lola. I want to do some gardening. I want to sand down the piano and paint it. I want to go to the pub with friends. I want to sort out my whole wardrobe. And make all the craft projects I ever put on pinterest. I want to go pick all the apples on the trees in the garden. I want to go on a bike ride. I want to be well enough to be at my friend Corinnes birth. I really want that. I want to drive. I want to visit friends.

Patience. It’s a virtue right?

 

patience

 

I will be patient. I have to be because I need to allow myself to heal and not do anything that could set me back.

So Im doing nice things whilst I recover. I watch a lot of films on netflix, Im watching a lot of TED talks (TED is a nonprofit devoted to Ideas Worth Spreading. It started out in 1984 as a conference bringing together people from three worlds: Technology, Entertainment, Design) I watch a lot of documentaries. I thought if Im sat in front of the box I can at least be learning new stuff!!

I am knitting. Im a crap knitter, I can knit squares. So Im knitting a LOT of squares that will eventually be sewn together to make a blanket.

Im reading. Im a big reader anyway but my concentration levels have been really low for a while, its nice now to be able to read more than one sentence (over and over again!) I was bought a book called The House of Leaves over ten years ago and got a third of the way through it before giving up. Its a very difficult read requiring you to flip back and forward and read things out of sync. My good friend James has just started it and has inspired me to try again with it… If you fancy reading it you can get it on Amazon.

Im blogging. Obviously as you are reading. It feels good to blog, its very cathartic for me and I can’t believe how many people are reading! Since I started in July Ive had over 10,000 views of this site – bloody hell chaps!!! Thank you!! From the bottom of my heart thank you for reading and commenting. Thank you.

Im planning our trip to Australia!!! This is a fab one. We are going to Australia via Vietnam to visit my sister, brother in law and niece in December this year, its the most exciting thing!! I was so worried about the trip before my surgery, nervous that I would have a flare up and ruin the trip, that we wouldn’t be able to do the things we wanted to do as I would be ill and need to be close to a loo. So now I have the bag, its exciting!!! There is no reason I can’t do anything everyone else can do. The only thing I need to think about it making sure I take enough bags and products that I need.

I meditate. Now don’t laugh!!! Im not ommmmming away in a corner, but I am spending ten minutes to sit and close my eyes, relax and partake in a bit of mindfulness. Its ten minutes of quiet. Ten minutes of feeling myself grounded, concentrating on my breathing and clearing my mind of everything. It makes me feel centred and calm. So don’t mock – try it… You might like it.

And I try to be patient.

Love Sam xx

First day out after surgery

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Tomorrow my eldest son becomes a teenager!!! Surely I’m not old enough for this? I still feel like a teen myself never mind mother of a teen!

So today we needed to go shopping for his birthday presents, everything is last minute because of the manic last three weeks. Timm was happy to go alone to get everything but as I’m feeling stronger each day I thought today could be the day to get out of the house!

It felt so good to dry and straighten my hair for the first time in three weeks. I had it cut by a lovely local mobile hairdresser last night so I immediately felt better. My hair has been scraped up in a bun and gripped back for weeks, totally neglected and due to meds and surgery was feeling dry, brittle and was snapping off on the ends.

I put on some make up and then faced my wardrobe…

I’ve been worrying quite a bit about clothes. I’m just not sure what to wear, trousers need to go under or allllll the way over my stoma and bag. Underneath is fine but then tops need to be long enough to cover the bag. Tight tops like vests would be perfect but they all seem a little short. Long tops or dresses cover the bag but then I feel like its kind of swinging freely which doesn’t fill me with confidence.

My mum suggested getting some if those over the bump maternity trousers. At first the thought of having to wear maternity clothes depressed the life out of me. But the more I thought about it, the more sense it made.

So today I wore I pair of high waisted, wide legged trousers. They were just the right height on my waist and kept everything tucked tight against my stomach. And a black vest with a stripy cardi. It felt great to be back in ‘real’ clothes. I felt more like myself today.

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Ileostomy bag wise – I’m currently using a two piece system. I chose the midi bag today over the maxi that I’ve been wearing since the op. I do have some mini but I worried about how often I’d have to empty that so went down the middle. If anyone has questions about the bags, please feel free to ask. Ill do a post about them soon.

So off to Meadowhall we went!

I was really nervous, I was worried my bag would leak and generally just worried about being out in public! I worried Id be knocked into or maybe I’d fall. It’s an odd sensation to be out somewhere so busy after spending so much time in hospital or at home. Timm was with me and made sure I took it slowly and best of all, he carried all the bags!!

I took a spare kit with everything Id need to change the whole bag plus a set of clothes just in case.  It made me realise that I would feel a lot more confident if I knew I could use the disabled loos.  Partly for the space and partly as they have a basin in the cubicle so if there were any issues I could deal with it all in private.  Definitely need to get one of the disabled loo keys…

We went for lunch at Eds American Diner, the food was great and if you go to their site and sign up to their club, you can get a free burger and then we got Charlie’s birthday pressies.

We then went to H&M where I bought two pairs of maternity jeans. They are perfect!! The waist band sits on my hips under the stoma but the elasticated top goes over the stoma and bag holding it close against my body. I’m not necessarily trying to hide the bag but trying to make it both comfortable and allow myself to feel confident. When it’s held against my body it feels safe. When it feels safe, I feel a lot more confident!!

Also got a new pair of boots because… well I think I deserve them!

All in all its been a great day with a big move forward.  Im tired out tonight but it was all worth it.

Love Sam xx

My Surgery – Subtotal Colectomy and End Ileostomy

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After chatting with my mum, I realised that as I natter away about my surgery, that it can be quite confusing as to what I have had done, so with the help of google I thought I would do a little post about the surgery.

I had a subtotal colectomy and end ileostomy.  This is an operation to remove the colon, leaving the rectum behind. It is most usually performed for patients with inflammatory bowel diseases.  The surgeons removed my colon (also known as large intestine or large bowel) and then formed an ileostomy which is an operation to create a stoma or an opening in the ileum (last part of the small intestine), which is stitched to the skin.

Before

subtotal colectomy ulcerative colitis

 

After

 

end ileostomy ulcerative colitis

 

 

So I have no colon.  My food goes from my small intestine out through a hole in my stomach (my stoma) and I wear an ileostomy bag attached to my skin at all times which collects all the poop.  I still have a bum but it isn’t attached to anything!! Which means I no longer fart or poo from my butt…

In the next 6-12 months I have a decision to make.  That decision is whether I have a further surgery that will remove the rest of my rectum and means I will have the ileostomy and wear a bag for the rest of my life.

Or whether I have an internal pouch made out of my small intestine which over the course of two operations would be reattached to my anus.  This would mean I no longer have the bag and that I would poo from my butt again.

I am currently not going to make that decision.  My goal right now is to recover from this surgery, get off all medications and get myself strong, fit and healthy.

Some people decide that the stoma and bag are just so convenient and easy for them to live with that they would rather not have more surgery and deal with all the consequences of reattaching the bowel.  For others it is entirely the right thing to do.

For me? Im not too sure right now.  I can’t even begin to think about these things and so Im not going to stress about it.  Ill make that decision in the coming months with the support of my doctors, nurses and family.

So I hope this helps a little to explain what I have had done!  For more information take a look at the NHS website or feel free to ask my any questions and Ill do my best to answer them!

 

Love Sam xx